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Tuesday, January 14, 2014

Some What-If Scenarios

I see no
benefit in wishing that things had
turned out better. That’s a waste of time and an emotional drain. However, I do
have an active, albeit MS-addled brain, and lots free time on my hands, and so
my mind wanders. I find myself imagining,
just for the fun of it, how
things might play out under different circumstances. For example…

Question one: What
if Kim had come down with MS instead of me?

This would
have been a disaster. I am so much better suited to have MS than Kim is, and
Kim is so much better suited to be a caregiver than I am. Don’t get me wrong,
Kim is a tough cookie and would have found a way to cope with MS, had she
contracted it. But she has no love for sedentary activities and has difficulty relaxing.
In contrast, many of my interests are sedentary, and I’m quite adept at kicking
back and taking it easy. Furthermore, Kim is a natural caregiver – it’s in her
DNA. I think I would have been an adequate caregiver, but I don’t possess her
rare combination of empathy and energy.

It’s best for
each of us, and for our marriage, that it worked out the way it did.

Now let’s ramp
the discussion up a notch to another subject I allow my mind to ponder at
times. Warning – some of you may consider this second scenario borderline morbid, in
which case I advise you to stop reading here (I’m talking to you, Carole).

Question two: Imagine
if Kim and I were the last two people on a sinking ship. There’s only room on
the rescue helicopter for one more of us, and the other will certainly drown.
Who should be saved?

I would insist
that Kim go on the helicopter. She, being the empathetic person that she is,
would insist that I go. Many people in committed, loving relationships would behave
similarly. So, although these would be noble gestures on our parts, they would
not be particularly unusual for the circumstances. But I would have reason and
logic on my side, instead of merely love, duty, and compassion.

Here’s what I
mean. If Kim were to live and I were to die, yes she would be left without the
love of her life. But she would most likely enjoy a long, active, independent,
healthy life, and one freed from the burden of caring for her devilishly
handsome, but significantly disabled husband. She would almost certainly remarry,
probably to a doctor, lawyer, or wine sommelier. However, if I were to live and
Kim were to die, I would be left without the love of my life and without my
primary caregiver. I would likely endure a shorter, more difficult life than
Kim would, and I would (will) suffer one health problem after another. I would
be completely dependent on paid caregivers who may or may not treat me with the
TLC that Kim does and would not necessarily have sex with me.
It’s conceivable that I could remarry, but I wouldn’t be exactly the most
eligible widower in town, iBot wheelchair or not.

I’m not being
heroic or romantic here. I’m being practical. Therefore, Kim, I don’t want to
hear any argument from you in the unlikely event that we find ourselves in a
sinking boat scenario. I’ve already stated my position clearly; now get your
ass in that helicopter!

Two clarifications:

First, I’m not saying I wouldn’t want to live if Kim were to die. I would find a way to marshal on. It just wouldn’t be pretty.

Second, I am by no means implying that my life is not worthy, that Kim would be better off without me, or that the lives of disabled people are less valuable than the lives of healthy people. I’m only making an assessment based on the scenario presented and an honest appraisal of our probable futures.

13 comments:

A friend lost her caregiver to cancer just before christmas. She's in a wheelchair as well but has a small, very supportive group of friends and relatives who are helping her out while she decides what to do next.I've wondered too, what would happen to me if myhusband were to die an early death, but so far he's healthy. I'm not in a wheelchair but certainly have my mobility issues and lots of others too.I hope we both stay lucky with our partners for our duration on planet earth.

there was a scene in the movie Titanic when Jack and Rose are trapped in a rapidly flooding room, handcuffed i think to a railing or something. Rose gets free, and goes off to get help. When we saw that, Alison told me that, although she loves me, she would probably not come back for me. I, like you, would insist that Alison get on the helicopter, for the same reasons you have.

I think of these scenarios, too. I agree that I'm better suited for being disabled, but it's because I have a tad more patience, and I'm more inventive. Also, I'd make a lousy caregiver!I don't think Titanic, but burning building. First of all, we'd never make it out if we both tried -- I'd muck up any progress. And if left alone, I'd soon be sent to "Shady Pines Nursing Home!"

I think people living in places such as Canada, like my friend Weeble, have many more, and less expensive, choices for assistance. In fact, MS is kicking her ass even worse than mine, and she is able to stay in her home by herself because she has so much professional help, in addition to her personal support system. I’m jealous.

Karen,

I’m very thankful for the internet! I don’t know how I would have stayed sane without it.

Stephen,

I remember that scene! Good example.

Muffie,

Yes, patience too. I’ve got more of that than Kim. Shady Pines sounds wonderful. Do you get green Jell-O for dessert there?

I think about this too, especially now that my husband is fighting cancer. We figure that between us, we have one fully operating brain and one fully operating body. Oddly, that works. He freaks out about it way more than I do, and especially when my back goes "out."

I'm pretty much one to take it as it comes but still, every once in a while I wonder if it would even be possible for me to get out the big garbage and recycling containers by using my scooter!

Carole, saying to you "whatever you do, don't press that red button" pretty much guarantees that you will press that red button!

Daphne, cancer? Damn! As if life wasn't interesting enough.

Webster, you bring up a good point about a person's comfort level with being catered to. I definitely have more of that than Kim does as well. She would argue that I have too much comfort being catered to.

I totally get where you're coming from, Mitch. Oh the crazy places our minds take us.I know what you mean about who "goes" first. I just tell my hubby that if he tries to go first I will kill him! It's as simple as that.

This is a very timely post for me, thanks! I can't say I have such morbid thoughts, but this morning I found myself thinking about how my hospitalisation last year (with brain cancer) disrupted my children's after school hobbies, to which I used to drive them, resulting in them losing interest and giving them up entirely, and I was wondering whether there might have been some realistic way to manage some continuity for them. I think the main thing is that we should be allowed to have such thoughts without being told that they are not helping anyone or that we should be thinking of more positive things, or that we are being unreasonable or unrealistic. It's our thoughts, right? It's probably part of getting back to normal life to think hypothetical thoughts about what we might do or think if we were able-bodied again. Though I hope that when/if you get the chance to go on a holiday you are not faced with such dilemmas!

I guess we should be allowed these thoughts as long as they don't consume us. We don't have a "right" to these thoughts if they are causing us health problems, mental or otherwise. But at the frequency I'm talking about, I agree with you. If I want to go down these roads once in a while, then that is completely up to me.

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About Me

Before my diagnosis I had a Chemical Engineering degree, an MBA, and a promising career. I had an amazing wife and two wonderful children (still do). I had a nice house with a swimming pool, a big lawn, and a bunch of toys. I was living the dream. I enjoyed a variety of physical activities such as golf, camping, hunting…driving, typing, and dressing myself. Then one day as I was jogging on my treadmill I noticed that my left foot went slap, slap, on the treadmill, whereas my right foot smoothly transitioned from heel to toe, heel to toe. After a year of visits to an assortment of specialists, I was diagnosed with Primary Progressive Multiple Sclerosis, a particularly disabling variety of MS. Twelve years later I sit here in my power wheelchair, dictating to my computer because my hands won’t allow me to type more than a couple of words. I can’t work anymore, and my wife now doubles as my caregiver. I’ve started this blog to help me pass the time while engaged in a productive activity- advocating for the disabled community, of which I am now a reluctant member. I am Mitch, and despite everything I am still Enjoying the Ride.